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THUS FAR, it looks like any book club: nine adults (including me) seated around a rectangular table in the humble meeting room at the Echo Park Branch of the Los Angeles Public Library. People riffle through snacks set out on the counter — edamame and string cheese, nuts, cookies, and apple juice from Trader Joe’s.

Today’s meeting will focus on chapters 10 and 11 of The Lost City of Z, David Grann’s gripping nonfiction chronicle about the legendary British explorer Percy Fawcett, who in 1925 ventured into the green hell of the Amazonian rainforest on a quixotic search for a fabled civilization, and never returned.

Francie Schwarz, an effervescent librarian with curly hair and a ready laugh, is the group’s facilitator. She hands out today’s study questions about Fawcett’s singular obsession, his nutty stoicism in the face of starvation and disease, and how he and his crew descended unmarked chutes of the Amazon — some of which dropped hundreds of feet. To get the conversation moving, she throws out a basic question, glancing at the faces around the table: “What was your favorite part of the chapter?” No one raises a hand.

She tries another approach, using the same enthusiastic tone: “If you could time-travel, where would you go?” She makes the idea sound, well, possible. Her own choice, she volunteers, is “the Americas before Europeans.” My mental movie unspools thundering bison herds on the prairie, Chumash warriors in long boats.

“Space trav-el …” Laura’s voice breaks in, the tone flat, the syllables uninflected. Schwarz’s question has jump-started the group into a more fluent reverie. Laura continues: “To see earth from above. But not ex-pensive.” Expressions on faces around the table suggest responses brewing, but no one interrupts during the long pauses in Laura’s sentences.

Larry — the group’s elder statesman, its moral philosopher — takes up the theme. He speaks with great deliberation and considerable effort.

Into the future, I would like to move on. [pause] I am always in the past, though I’m only two minutes [pause] from the future.

Some of his pauses are longer than his sentences. Everyone appears to be listening intently to Larry’s gruff voice. Is this quality of attention just polite restraint? No, it’s something else; something notably absent from much social exchange these days — it’s patience.

Each person here respects the effort, the frustration of trying to locate the words, the sounds that form a sentence. After all, this is not an ordinary book group. This is the weekly meeting of the Aphasia Book Club, intended for those who have suffered damage to an area of the brain that affects the use of language. Larry continues:

When I read a book, it puts me in the future, even when it’s written in the past.

Larry’s going for it. He so wants to get the words right. He leans forward in his wheelchair; grips the table with his one good hand to aid the effort:

I see a person like myself living in the future [long pause] always finding a book … so the more I experience, the more future I’m living in.

Everyone guffaws. Then Ron volunteers that he wants to “go back to the ’60s: where people did drugs, didn’t think much about politics, just had a good time.” I’m back at Mist Mountain Farm — our Oregon commune — a naked acid trip in the garden.

Schwarz gently asks Levander — who has perhaps the most difficulty speaking — “Where might you time-travel?” His answer is a shrug and a smile. He will not speak, but he is pleased to have been asked.

“The late 19th century, the age of invention,” is Susan’s choice. A few of us chime in, listing a few discoveries from that time: the telephone, escalators, the rabies vaccine.

Lastly, Uma puts her gift of time travel to good use:

I would go to Cedars, And I would drill my skull. And I wouldn’t have an aneurysm.

¤

I’ve been a visitor in the Land of Aphasia for just over a year now. When I join the group around the table in the Echo Park Branch meeting room, I practice listening. I sharpen my awareness of gestural cues, facial expressions. I practice not racing ahead. I practice accepting the unsaid as part of what is said. I make note that what does get communicated is usually worth the wait. For hyper verbal me, attending the weekly two-hour session of the Aphasia Book Club is a welcome refuge from the daily barrage of emails, texts — my speeded-up multitasking reality. If, as poet Diane Ackerman writes, “words are the pass-key to the soul,” then the communal effort to find words — as I witness in this room — is a soulful endeavor.

The members of the Aphasia Book Club are all more than a year out from their initial injury, what’s called the chronic stage of aphasia. Some have more difficulty with the reception and recognition of spoken and/or written language, others with the production of speech.

Over the last several months, I’ve learned some details of their injuries, their backgrounds. I know that pre-stroke, Larry was a theater professional — he directed plays Off-Broadway and on; he directed TV and film and taught theater for decades. Now he’s in a wheelchair, his body bowed. Under the brim of his baseball cap, however, his eyes are unmistakably inquisitive, mischievous.

Susan, a graceful woman with the cheekbones of Meryl Streep, was a yoga teacher for 20 years. She was demonstrating an asana in front of a class when she collapsed — to awake in the ICU, unable to speak or move. For many years, she has been the leader, “the boss,” as she jokingly puts it, of the Cedars-Sinai Aphasia Support Group, where many of the participants in this book club first met.

Jeff, in his 40s, injured his brain in a water-skiing accident when he was 26. Fifteen days prior to his massive stroke, Dean had started his dream sales job for a solar manufacturing company. He volunteers twice a week at the homeless shelter at St. Charles Borromeo Service Center in Moorpark and attends the book club faithfully. “Reading helps with my talking,” he says, “I’m doing what I gotta do.” Laura was once a creative design manager at a tech company. She blacked out at home in the shower, a prelude to many smaller strokes, caused by a constriction of her internal carotid artery, a disease known as Moyamoya, Japanese for “smoke” (so named because the arteries branch out from the constriction, resembling the branches of a tree or a puff of smoke).

Uma, with family roots in Sri Lanka, suffered her stroke just a week after her fiancé (now her husband) proposed to her. She was an aspiring actor at the time, just 27. For weeks she hovered between life and death. I know this because a friend of hers wrote an excellent play based on his experience waiting outside the ICU in the days after Uma was stricken. Strokes and the consequences of aphasia change not only the lives of those who suffer them, but also the lives of spouses, lovers, parents, friends — those who care for them and those who love them.

When I first saw the phrase “Aphasia Book Club,” I thought it was a joke. It was on a list of mini-grants funded by the Library Foundation of Los Angeles, the nonprofit where I work. “Aphasia” and “book club” would seem to make strange bedfellows. Or so I thought. As it turns out, it’s a brilliant coupling.

Like many others, I mistakenly assumed that difficulty in speaking implied a deficit in intellectual acuity. It’s not true. As Laura succinctly informed me: “Aphasia is a language problem. The core of your intelligence is totally intact.” Which makes it even more heartbreaking when an adult with a full quota of life experience and intelligence is treated as if s/he has the comprehension of a toddler. Those who attend the book club have a special drive; their presence here is one way that they actively combat the social isolation and concomitant depression that often results from aphasia.

The neurologist Antonio Damasio defines aphasia (literally “without speech”) as “a breakdown of the two-way translation that establishes a correspondence between thoughts and language.” Most commonly, the condition is the result of a stroke caused by a blood clot or a bleed in the brain; but it can be caused by virtually any neurologic insult that affects language-related areas in the cerebral hemispheres People with aphasia have trouble speaking, reading, usually writing, too — depending on what area of the brain was injured.

The manifestation of aphasia can range from a near-complete loss of the ability to retrieve words or understand what others are saying to fairly fluent speech and a comprehension that only breaks down when language becomes more complex (with some poetry, for example). Whatever the severity of aphasia, it’s a very frustrating experience, compounded by a general lack of public awareness of the condition. There are passionate advocates for AIDS, muscular dystrophy, breast cancer, and other diseases; but it’s difficult to be a vocal advocate for aphasia when your speech comes out a jumble.

The idea of starting a book club for adults with aphasia was the brainchild of Francie Schwarz and her husband, Dr. Mike Biel, a speech pathologist. Schwarz, a librarian with the Los Angeles Public Library since 2011, realized that — even with the huge array of resources at the public library — aphasia sufferers were not being well served. She and Biel recruited several members from the Cedars-Sinai Aphasia Support Group to help plan the book club, which, as far as she has been able to establish, is the first and only aphasia book club at a public library in North America, perhaps in the world.

Schwarz’s initial proposal met with both enthusiasm and skepticism. Her supervisor liked the idea, but public library resources must by definition be offered for free, and funds were needed for supplies like study guides from the Aphasia Center of California, audio versions of selected books, and snacks for the participants. The Library Foundation grant covered these expenses and provided the seed money to get started.

But there were other well-founded concerns about the venture. Book clubs at libraries, under the best of circumstances, can be hard to sustain. “They may start off strong,” Schwarz told me, “but membership eventually dwindles to three or four people, who may or may not show up. What none of us understood, except for perhaps Mike, was that you will never find more motivated readers than those who can no longer take reading, or the ability to discuss what they’ve read, for granted.”

Mike Biel began working with people with aphasia at the VA hospital as part of his training in speech pathology and it was there that he began his study of the disorder. For a long time, he told me, it was common for many doctors to inform their stroke patients that the “window of opportunity” for regaining mental and physical abilities closes after three months to a year. For many, this became a self-fulfilling prophecy. Biel, a tall, lean, affable man who enjoys the give-and-take of conversation, frequently reminds people that yes, aphasia is a medical condition; but it’s a treatable medical condition.

With new research and data supporting the scientific credibility of neuroplasticity, what neurologist Oliver Sacks calls “the endless adaptability of the human brain,” there is no longer an accepted “plateau” for recovering language. Use it or lose it. As Biel often reminds the group, if you keep working, if you keep practicing, if you keep trying to read and trying to speak, improvement comes. Most people with aphasia, he observes, struggle with motivation.

“What the Aphasia Book Club implicitly says,” explains Biel, “is that everyone here has the intellectual capacity to read and understand books that others who have not had a stroke can understand.”

Schwarz adds, “When you are talking about a really good book — or even a crappy book for that matter — there’s always something in there that’s going to be about you or your life or someone you know. And when that happens, the disability becomes incidental. We’re just a group of people talking about this book, and often, honestly, I forget that people in the group are having trouble speaking. I’m just listening and they’re saying interesting things and I’m so grateful.”

¤

The actor Kirk Douglas suffered a stroke in 1996. His memoir, My Stroke of Luck, is recommended on the booklist provided by the Aphasia Center of California. The last chapter is our discussion topic today.

This reading selection has not been a universal hit. Schwarz reassures everyone it’s okay if they don’t like the book, and that they’re welcome — in the future — to depart from the vetted reading list. Everyone is buoyed by that news.

Dale, who, before his stroke, worked in film production, owns that Douglas is a “good guy.” “But,” he complains, in his inventive syntax, “he has also so above it all.” Susan likewise has little sympathy for the movie star: “He got into his pity party. He name-drops a lot. As if he’s the only one who suffered. What about me?”

“I am also in Vietnam. He didn’t give that in there!” Dale indignantly adds. Susan has another criticism: “Little people! Thousands of us out here!” Dale sums it up, pounds his hand on the table: “We learned to THROUGH it!”

As the emotional tenor shifts down a gear, Schwarz gently queries the group, “How does surviving a stroke change you?” I think of my father — whose first heart attack struck at age 50 — confessing his terror of suffering a stroke, being left mute and helpless (like his best friend Artie Bushkin). It was the fate he feared more than any other.

What I’m hearing today, though, would have surprised him as much as it does me. After his stroke, relates Ron: “You have a second life to lead, and when you have a second life, you want to do good. And that’s why people look to God. Before the stroke, you didn’t have TIME to think about God and people who help me. Before I cared, but I really didn’t do anything about it.” Jeff concurs, adding: “You have time. Think about what you’re doing. Your friends aren’t what they used to be.”

Something is lost, but what I begin to understand is that there are unique gifts bestowed by this disability as well. In this reordered way of thinking and speaking, something is gained. Ron reminds us, “It’s not easy. Are you going to work on it. Or not?” After a silence, Uma says, “I love our book group. I love everyone here.”

¤

With aphasia, sometimes the right word finds its way to the surface. Often it doesn’t. Sometimes the brain takes a scenic byway. Then, the “wrong” word may serve as the right word. “Frog” becomes “fork.” “Volcano” gains a syllable — “volacano.” For those of us in the room who are nonaphasic, the instinct to help — that is, to jump in — is difficult to suppress.

Schwarz poses that question to the whole group: “When is it appropriate for me to say what I think you’re trying to say?”

While a few of us nod in recognition of a truth, Susan jumps in. “I may say yes when I mean no,” she says. “But I know the difference. I’m trying.” This inspires Larry, who says, in a gruff voice: “When you say yes when I mean no, it’s a way of erasing me as a person. If you [pointing to Schwarz, whose eyes open wide] correct me, I’m grateful. If a stranger does it, and they’re wrong, then I’m angry.”

Again we wait in silence — some of us contemplating the times we might have gotten it wrong. Susan adds: “Good to wait. Let us find another word. Like looking for a parking spot. When you get too many suggestions, your brain gets confused. Everyone has to rush.”

Biel explains how words that are “high frequency” are easier for people with aphasia to say. “Imagine all the words in our head are on the bottom of the ocean,” he says, “and we have to activate them with our brain. It’s harder to find words you didn’t use before.”

One word few people here used before their stroke is aphasia. It’s hard to remember. It’s hard to pronounce. It’s buried under rocks at the bottom of the sea.

“Let’s rebrand aphasia!” Susan suggests with a subversive glint in her eye.

The nature of the insult that results in aphasia is a blockage of blood to the affected region of the brain causing a lesion, a death of cells. The location of the dead cells pinpoints the functions concentrated in that area, allowing researchers insight into the location of the processes of the mind. In the brain, function is in part ascribed to location. As my neurologist brother, Dr. Lawrence Steinman, explained, “You can’t recreate the situation that occurs in a stroke with an experimental subject in a lab. We study strokes resulting in aphasia because it informs us most eloquently about the location in the brain of the most human of functions — language.”

Psychologists, linguists, computational scientists, and philosophers are also drawn to study aphasia as a testing ground for theories of mind and brain. So are artists. The Aphasia Book Club also served as a laboratory of sorts for Kerry Tribe, a Los Angeles–based visual artist whose work in film, video, and installation probes the gaps between perception, cognition, and memory.

Tribe began her recent project over a year ago by “embedding” at the Cedars-Sinai Aphasia Support Group. She spent hundreds of hours recording interviews, eventually narrowing her subjects to three — Dale, Laura, and another stroke patient, Chris Riley. Their intertwined narratives became the subject of a film, a 28-minute loop, that was the centerpiece of Tribe’s provocative installation The Loste Note, which ran this past spring at 356 Mission in downtown Los Angeles.

I met Tribe, an energetic and enthusiastic woman in her early 40s, at the book club on a hot afternoon last summer. She wore shorts and sandals, her long hair loose. She’d brought a big bag of fresh plums from her backyard in Eagle Rock to add to the array of snacks. I noticed right away her easy familiarity with the group members, and they with her.

That day she screened some footage from her film-in-progress to the group, prompting Ron to ask, “What do you think the audience will get out of this?”

“I want people to understand what people with aphasia struggle with,” she told him. “I want to create an aphasic space for a nonaphasic audience.”

When I visited her Glendale studio not long after, Tribe was still unsure of how to structure the narrative. We sipped from mugs of dark tea as she brooded aloud on how paradoxical it was to make a documentary featuring “people talking about having a hard time talking.”

Six months later, when I finally saw the finished version of The Loste Note, Tribe’s three-channel film installation, I was astonished. She had completely abandoned the idea of pictorially representing her subjects. You will see no faces of the subjects in Tribe’s “documentary.” Instead, she forged a cinematic language to convey her subjects’ inner experiences, their attempts to reconstruct the past, their meditations on how they inhabit the present moment.

The Loste Note is an experiment in radical empathy; empathy in the sense that essayist Leslie Jamison defines as “a penetration, a kind of travel. It suggests you enter another person’s pain as you’d enter another country, through immigration and customs, border crossing by way of query.” Using imagery, animation, and editing, Tribe’s installation asks the question, “What does it feel like to live in the Land of Aphasia?”

A viewer watches intercut images of architectural interiors, wind-blown green jungle palms, shooting stars, tangles of arteries viewed through a microscope, glistening geological specimens. We hear Laura’s voice recounting the morning of her stroke, how she fell into a bush, “not knowing it was crooked,” while on-screen the interior courtyard of a mid-century apartment collapses in on itself and the landscape shifts to a precarious tilt. When asked by her speech therapist to name fruits, Laura can only — bizarrely — come up with the word “star fruit.” An armada of gorgeous golden star fruits blazes right to left across the three screens. Who could ever forget a starfruit?

Chris Riley, one of the three subjects in the film, was an accomplished artist before his stroke. As a young photographer, he and another photographer, Douglas Niven, traveled to Phnom Penh, Cambodia, where, on the second floor of an old schoolhouse — the notorious Tuol Sleng, which became known by the shorthand S-21 — they discovered rusting metal cases containing over 7,000 decaying photo negatives. This was the discarded “official” archive of the Khmer Rouge — the faces of startled victims posing before their executions. Riley and Niven took on the arduous job of restoring the negatives, and, in 1996, published the photos as a book (The Killing Fields, Twin Palms Publishers). Their project, exhibited at MOMA, is a unique and extraordinarily harrowing record of a genocide.

Dale’s inside-out sentences recounting his traumatic four years in Vietnam as a Navy SEAL are voiced by his avatar, an (animated) seal sporting a red kerchief and a white sailor cap. The creature’s mien is mournful, even remorseful, as he explains one source of his memory misery:

And … he died because I had to koot him first for he was going to kill me first. I haven’t been able to put that out back of my brain …

Before his injury, Dale had been on a decades-long quest to make an animated children’s film. After his stroke, however, none of his former film industry colleagues would take him seriously. Tribe creates her own version of Dale’s unmade film, in an ecstatic finale where a magical animated kingdom bursts into life with a smiling “Volacano” presiding over a world of “buttleflies” and bees and buds (bugs), and a beneficent spider (or “spidder,” in Dale-speak) conducts a rousing chorus sung by all the creatures. The song (which stuck in my head for weeks) celebrates a new-forged bond among friends who understand each other, who come together to read poetry and books — in short, the Aphasia Book Club.

¤

Previously, Tribe and I had attended a book club session that tackled Stanley Kunitz’s magnificent poem “The Layers.” We took turns reading the lines aloud:

I have walked through many lives, some of them my own, and I am not who I was, though some principle of being abides, from which I struggle not to stray. When I look behind, as I am compelled to look before I can gather strength to proceed on my journey, I see the milestones dwindling toward the horizon and the slow fires trailing from the abandoned camp-sites, over which scavenger angels wheel on heavy wings. Oh, I have made myself a tribe out of my true affections, and my tribe is scattered! How shall the heart be reconciled to its feast of losses?

As I listened, I pondered the “feast of losses” present in the room. Careers dashed, plans waylaid, self-images upended. As different members read aloud, they transformed words into other words, making surprising cognitive substitutions.

The poem ends, some lines later, on the poet’s “darkest night,” during which he hears a “nimbus-clouded voice” that directs him to “Live in the layers, / not on the litter.”

“Does anyone want to respond?” asked Schwarz. A long silence; two people held their heads in their hands.

Dale was the first to speak, admitting he felt “lost.” Ron said the poem made him dizzy. Uma added, “In listening, I went and closed my eyes.”

With aphasia, the brain’s ability to generate meaning to match a sentence that is heard or read is often impaired. In Tribe’s film, we hear Laura’s voice describe how — in spite of that disability — she found her own work-around to ultimately absorb Kunitz’s poem:

And it’s beautiful but I don’t hear it so I just see everyone and can feel it in my gut but I can’t really hear it so I just feel everyone’s warmth and emotion and then it’s abstract, it’s not a narrative that makes sense. So then I got to the point where he says “live in the layers” and I cried.

Laura’s words gather themselves like a poem, recalling Tribe’s belief that “in a sense, all poets have aphasia. They are always struggling to find the right word.” Poets and people with aphasia share the gift of altered perception.

One Saturday I meet for coffee with Susan Swan, the yoga teacher, to talk about her stroke, to hear her tell how she had to start all over again learning to speak, to understand speech. She tells me how, when she first heard about it, she also thought the Aphasia Book Club was a joke. (“Me too. I was hahaha …”) She attests to how attending the Aphasia Book Club and pushing herself to try what seemed impossible helped her regain the ability to read fluently.

“You never know where your next teacher will come from,” she told me calmly, referring to her stroke. One of the lessons of her stroke experience was the realization of how “so much of what we talk about is useless, to fill up space.” While still in the hospital, she recalled, a friend came to visit. He sat on the edge of her bed and kept chattering, “What are you going to do? What are you going to do? What are you going to do …??”

“I looked at him,” she said, “and told him, ‘I’m going to go on.’”

“I can’t go on, I’ll go on.” The famous line from Samuel Beckett, who in Waiting for Godot describes God’s inscrutability as “divine aphasia” and whose protagonist in the novel Watt jumbles the order of words and their meanings. Near the end of his life, Beckett himself suffered a stroke and experienced the torments and isolation of aphasia, no longer able to render in words and sentences the thoughts in his head.

¤

I’ve continued attending the Aphasia Book Club long past that first visit, the one based on sheer curiosity. The group members have ventured far afield from the approved “aphasia-friendly” reading syllabus.

Last fall, they spent weeks reading my 2001 memoir, The Souvenir, based on my father’s letters home from the Pacific War and, as well, my return of a Japanese flag to the family of a Japanese soldier my father faced in battle. Growing up in a permissive household, my siblings and I were issued one strong admonition: “Never ask your father to talk about the war.” It was a silence that informed my childhood, and one I sought to unravel after my father’s sudden death from a heart attack in 1990. Cleaning out my parents’ condo, I discovered a metal box with over 400 letters that my father wrote home to my mother from the Philippines, where he served in the US Infantry. He’d endured, I learned, a gruesome battle that lasted over 165 consecutive days. In the letters, I encountered the expressive poetic man my father had been before the war, before combat took its toll.

Reading The Souvenir spurred conversations around the table about the invisible wounds of war, about family secrets, about living with someone who has been altered by trauma. Uma talked about her family’s exodus from Sri Lanka after the civil war there, how no one in her family would talk about it. “Like a curtain came down,” she said. Dale saw “awful things” as a Navy SEAL in Vietnam, but could not or would not say more because a Navy SEAL has to be, in his words, “silent on top of silent.” Laura, adopted as an infant from Korea, remembered when a Korean War vet called her a “bad word,” and she had to ask her dad about it. Dean was inspired by reading the book to query his mother, who’d kept the letters of his grandfather, who was stationed at Pearl Harbor during World War II. Larry told me, “Your book would make a good film,” and added wistfully, “ I wish I could direct it.”

Next up, Uma suggested that we read a play, and Larry cast his vote for Clifford Odets’s gritty 1935 family drama, Awake and Sing!, which the author described as “a struggle for life amidst petty conditions.” Years ago, Larry directed the play Off-Broadway. The book club members asked him to lead the discussion. Larry’s wife, April, an accomplished actor and acting teacher, joined our session that day. She reminded the group how in a novel the narrator can tell you everything. “But in a play, it is the actor and director who give meaning to the words.” I sensed she was nervous for Larry in his role as discussion leader.

Larry had a lesson plan in mind for our session. He’d haltingly read a sentence aloud, then demand, “What does that MEAN?” With new authority, he looked directly at each one of us in turn. His voice grew stronger, his gaze bold. In the playwright’s introduction, Odets describes the character of the Jewish mother as both “naïve and quick […] afraid of utter poverty.” Larry asked, “What is naïveté?” “People who are not reflective?” ventured Laura. “Yes, that’s the difference!” said Larry. “Isn’t the mother both shrewd and naive?” Susan suggested. “Yes,” said Larry. “Every mistake in her life leads to right wrong.” Shrewd. Naive. More words uncovered from the bottom of the ocean, more precise syllables to give color to inner experiences. Parsing the characters and their motivations fascinated everyone, as we encountered aspects of our own flaws, values, habits, quirks. I glanced at Larry’s wife. She was beaming.

Speaking to the audience at a panel discussion after the opening of Kerry Tribe’s exhibit, Larry explained what the Aphasia Book Club has meant to him:

I’ve spent more time in this group than I’ve been in any club, because the ones that would have me — I wouldn’t want to be with. [pause] So I came to this group moaning and groaning, and I learned so much in the group. [pause]

I learned so much from other people.

This deserves me to be part of it. I did. And I am. And I still do feel a part of it. And I want to thank those who organized the group [pause] for enriching my life, really enriching it [pause] more than I ever thought possible [pause]